Update Seizures, Dr appts etc.

So we snuck out of August with just 3 seizures but in the first few days of September she had 3 seizures and one lasted a long time. She had a little sniffly nose when those happened so it may have been a cold or allergy related. We are holding at her current meds levels. She's still a rolling queen and loving the motion and mobility.

Now that our babysitter has returned to school we are without anyone on Tuesday and Thursday so Curt and I take turns feeding or playing with Cailyn throughout the day. We've had a few leads but nothing solid yet.

The geneticist has not come up with any other suggestions or tests, so next week she is going to send me the paperwork for two blood tests and then if those are negative we are released until a follow up visit next June.

I just got a prescription for Flouride so hopefully that will help her teeth. She has slowed on the grinding a little, it sounds more like squeaky shoes than nails on the chalkboard. She continues to bite and rake her teeth on her middle finger and fleshy part of her palm beneath her thumb so they are getting a little rough and caloused.

Starting next week she will be getting OT on Mondays so she will have some form of therapy, PT or OT everyday of the week. It's taken me a year to get this all pulled together especially because between my insurance and the medicaid it is all free.

Later in September she'll see Dr. Im who is a Physiatrist who practices Physical Medicine & Rehabilitation. He's supposed to help us evaluate her, her current treatment, make recommendations for care and possibly predict what the future will hold. Two of my friends have taken their sons there and said he is amazing. The evaluation will take 45 minutes and I'll bring her goals and evaluation from the Early Intervention Program with us.

In October she'll go for the ABR, the stupid hearing test they have to sedate her for, still not pleased with this one but I guess it is helpful to have the full picture. Also in October she'll be tested for the flu shot to see if she's too allergic to the egg. If she's not they'll be able to administer the shot in the allergists office. Curt and I will get the flu shot next week at the Pharmacy. I asked today and that's when they'll get it in. I'm still not sure about H1N1 shot for any of us. The pharmacy is not getting it and the allergists office wasn't sure if they'd get it either. It just seems a bit rushed to market and I'm not sure it's been tested enough.

Still going back and forth with the Mortgage Company on our Loan Modification/Refinancing and the Medical Equipment guy for the seat and stander for Cailyn. It's always busy with something. Can't believe it's already September.